VWD

Leadership, Remembered

This has been a week of leadership reflection regardless of who you voted for. I read from one news source that Biden made this a campaign about character; and many friends on Facebook stand by Trump for his policies. These traits, and so many others, are what make up leadership. While it has been a rocky week, and an exhausting, challenging year, it is all about leadership.

Laurie Kelley and Renee Paper 2002

I reflected on leadership this week coincidentally, while remembering one of the greatest and most unique leaders we ever had in the bleeding disorder community—Renée Paper. She passed away November 7, 2007, at age 49. If you ever got to meet her and hear her speak, you probably never forgot it. I always say she was a great lady, in size, intellect and passion. The most intelligent woman I ever met. She had a photographic memory, razor sharp tongue, ribald sense of humor, love of animals and fiery passion to help people. She was an emergency room nurse who had von Willebrand disease (VWD), and truly became our foremost spokesperson and advocate for women with VWD. After hearing her speak (like a cannon going off) at various events five times, I was so excited myself (why wasn’t anyone doing anything to help those with VWD?), that I talked her into co-authoring a book with me, which became the world’s first book on VWD, published in 2004.

I could not imagine that I’d lose this amazing person, who lectured like an old time preacher, who could draw audiences from young women to seasoned hematologists, who pounded the podium in her quest to get the NHF, the country, doctors, patients and even the government to take women with bleeding disorders seriously. Who can forget her favorite line? “Know why doctors don’t take us seriously when we tell them we bleed too much and too often? Because men don’t have uteri!” And she would smile to see the audience either squirm (the men) or roar with laughter and approval (the women).

She and I traveled together, presented together, wrote together. She loved coming to visit my zany household (“You let your kids roller skate in the house?” she asked incredulously) And then proceeded to reprimand me for not giving my elderly dog pain killers.

I loved Renée and sadly witnessed her demise; years of health issues took their toll. She died far too young. She had character and was a character. She also possessed those vital traits of great leaders: compassion, boundless energy, drive, passion, and vision. She didn’t live long enough to see her vision come true. We do have much better care for those with VWD now. But I often wonder hw much further we could have gone, had this amazing leader stayed with us a bit longer.

A new edition of A Guide to Living with von Willebrand Disease will be available in 2021.

A Star is Born

Continued from last week; a profile in leadership. Andrea Trinidad, woman with VWD, who is changing lives for all with bleeding disorders in the Philippines. Reprinted with permission from Jojo Silvestre, the Daily Tribune. https://tribune.net.ph/index.php/2019/04/30/ambassador-for-bleeding-disorders/

Star was born with bruises all over her body. At three weeks old, she had a nosebleed that prompted her parents to take her to the emergency room.

Andrea told the doctors that her family has a history of bleeding on both sides. A nephew from her father’s side just got diagnosed with severe hemophilia.

“‘No, she can’t have hemophilia. She is a girl,’ the doctors told me,” recounts Andrea.
Star grew up having at least one nosebleed episode every week. On bad days, she would nosebleed daily. Finally, in 2006, Andrea brought Star to Hong Kong. It was there that she and Star were finally diagnosed with a bleeding disorder called Von Willebrand Disease (VWD).

More common than hemophilia

Hemophilia, VWD and other inherited bleeding disorders have similar symptoms — bruising, nosebleeds, gum bleeds, excessive periods, to name a few. While hemophilia is the most known bleeding disorder, VWD is actually the most common. According to the WFH, VWD affects roughly 1 to 2 percent of the population.

“That was also when I realized that there are very limited resources here for people with bleeding disorders,” Andrea shares. “Managing bleeding disorders is expensive. But the scarcity of medicines — the factors — is something that truly surprised me. That even if you have the capacity to purchase these medicines, there are times you can’t find enough supply.”

Andrea soon started a blog to share the family’s experiences and in some ways, reach out to people around the world who have the same bleeding disorder. She was surprised by the amount of attention her blog received and the number of people who linked up with her. She then saw an opportunity to learn more about rare bleeding disorders and share with others whatever knowledge she could gather. It opened a whole new world for her.

Founding Hemophilia Advocates

In 2008, Andrea met Laurie Kelley, founder of two humanitarian programs — Save One Life and Project SHARE. Laurie came to the Philippines to do a fact-finding mission to gather data on the situation of persons with hemophilia in the Philippines. She invited Andrea to come along. It was an eye-opener to the very sad situation of Filipinos with bleeding disorders. She vowed to help the community and became a local volunteer for Project SHARE and Save One Life.

In 2011, she was invited to become an ambassador for My Girls Blood, a US-based non profit specifically aimed at raising awareness that women can also be affected with bleeding disorders.

In 2016, Andrea along with four others, founded Hemophilia Advocates-Philippines (HAP). The group’s main goal is to push for government-funded treatment for people affected by bleeding disorders.

“Hemophilia and bleeding disorders are lifelong but manageable. If we have access to treatment, we can lead normal lives,” she says.

But that is not so for most affected Filipinos. Treatment for a simple, non-life-threatening bleed, such as internal bleed in the joints, could cost around P100,000 for a single infusion for an adult.

Through the network Andrea helped to build among donors and beneficiaries, HAP has been able to bridge that gap. International organizations, such as Project SHARE, send medicines to HAP, which in turn, distribute to those who badly need them.

Global ambassador

Andrea’s personal advocacy has brought her to different parts of the globe, at her own expense, to link up with other organizations, so she could learn more about it and also seek help for the less privileged Filipinos who also have the bleeding disorder but don’t have the means to get treatment.

“Being an advocate has helped me more,” Andrea says. “Our journey with von Willebrand Disease is no longer as lonely as it used to be. We now belong to a real community of people who ‘speak the same language.’”

When Facebook introduced the Facebook Group, Andrea started a support group, which then became the HAP, which celebrated its second anniversary recently. Aside from providing factors, the organization also helps empower patients through scholarships and business opportunities.

Legislative advocate

Since she started the blog, Andrea worked nonstop with her advocacy. Today, she is busy lobbying for the passage of Senate Bill 1335 or the “Bleeding Disorders Standard of Care Bill,” which seeks to give free treatment for persons with bleeding disorders such as hemophilia, VWD and other inherited bleeding disorders. The bill also seeks the establishment of Hemophilia Treatment Centers across the country.

She also hopes that through the proposed bill, medicines, especially donated factors from overseas, will reach its recipients the soonest possible time.

Andrea and her daughter still occasionally need blood transfusions but she no longer feels helpless unlike before. She is able to live with the disorder while seeking help for others at the same time.

“If I wanted to, I can just focus all my energy on me and my daughter,” she says. “But I believe that I inherited this disorder for a reason. For as long as I can, and for as long as the hemo community needs me, I will continue with my advocacy of helping them.”

Know Your Factor Choices

It’s truly a new era in bleeding disorders with new products, new therapies and new indications. Octapharma’s wilate just got approval for indication in adults and adolescents with hemophilia A; previously it was indicated only for VWD. With this news, I realized that we should remind everyone to know what product they use, where it comes from, and why they are using it.

Who chose your product? Was it your hematologist? Did you have any input? You should, and this means bearing the responsibility to read about products, as questions about them and be part of the decision making process.

Back in 1990, when Raising a Child with Hemophilia was first published, we were the first ones to describe parents and patients as consumers, and to treat products like any other commercial product you would buy. We provided the question to ask your doctor, and we explained the different manufacturing processes, and the difference between safety and purity. And we urged parents not to be passive in the treatment process but to help make medical decisions.

It’s more important now than ever. We have a dazzling choice of products, and novel therapies like Hemlibra. Maybe there’s no reason for you to switch products, but you might want to get up to speed on what’s available. Please note: all US FDA-approved products are considered safe and efficacious.

We’ve been writing about products and product choice for decades. I hope you read up on them and be prepared! To help you, we created a chart of products that you can download. Take it to the HTC with you and discuss with your hematologist about choice. You can download it right from our home page or go here.

We also have a chart for VWD products too!

We did our part. Now do yours; know your product, manufacturer, and why you use it. Keep learning… more therapy choices are coming!

Remembering Renée

Laurie Kelley and Renée Paper, 2002

This past week I’ve been working diligently on updating my book, A Guide to Living with von Willebrand Disease. I feel guilty saying it’s my book—it was actually “our” book, my and Renée Paper’s. It’s been out of print a while, and we truly need this resource. While thinking of Renée as I edited it, I realized that tomorrow marks the 10th anniversary of her passing, and working on this book made me realize again what a valuable leader, friend and advocate she was.

She was only 49 when she died, after an eight-week hospital stay following a fall. She had dealt with multiple health challenges: von Willebrand disease, diabetes, hepatitis C. Compounding this was obesity. After she lost her sister Michelle, who suffered from similar health concerns, she decided to have gastric bypass surgery, in an attempt to improve her health. She lost a remarkable amount of weight, but the years of illness had taken their toll on her body. What’s truly amazing is that nothing, nothing, seemed to slow Renée down!

She traveled and lectured frequently. She was a powerhouse when lecturing. I saw her absolutely command a room full of nurses and doctors with her photographic memory, brilliant knowledge of VWD and her deep-seated passion. She spoke with authority, compassion and a call to arms, for everyone to find unidentified VWD patients, get them the treatment they deserve and need, to stop the silent suffering of women. She herself had had a hysterectomy in her early 20s, rendering her unable to have children, when doctors did not correctly diagnose her with VWD and sought to end her uncontrollable bleeding. I think in part her burning dedication and fiery style of lecturing was fueled by the embers of what was left of her ability to control her life, to have children. She didn’t want this to happen to any other woman.

Fiery style of lecturing? If you never heard a Renée Paper speech, you missed some great and shocking speeches. One of my favorite lines by her was when she blamed the medical community for misdiagnosing women who had VWD as being “hysterical,” or “imagining” their illnesses. “You know why this happens?” she would bark out. “Because men dominate the medical scene! And you know why they don’t take us seriously? Because men don’t have uteri!” Leave it to Renée to always use the correct Latin plural of uterus.

 Renée traveled with me to Puerto Rico and the Dominican Republic on business together, and she and I presented in places as close as Connecticut and far away as Australia. She was brilliant; she was fun-loving. She was could be irreverent yet compassionate. She loved animals, and one of her favorite gifts to her friends was to send a photo of herself each New Year’s with a different animal from different parts of the world: kissing a dolphin in the Caribbean; draping a boa constrictor around her neck in Mexico; nuzzling an alligator in New Orleans; atop a camel in the Canary Islands. Renée knew how to grab life by the horns and tame it, and she wanted others to do that, too, regardless if they had a disorder or disability.

 Renée walked the talk: her message was always to get educated about VWD. Don’t let it keep you from enjoying life. Play the hand you were dealt. (Yes, she was from the Las Vegas area!) Play it and win.
Renée was a visionary leader. As an emergency room nurse in Nevada, she saw the need for a patient-based hemophilia organization and an HTC. Nevada had neither when she first lived there. Typical of Renée, she saw the need and figured out how to meet it. She founded Nevada’s first patient organization and HTC, both of which continue to this day. In fact, November 1 is Renée Paper Day in Nevada! How many people can claim such an honor?

 So we remember an inspiring and action-oriented leader, who was warm and loving, and also at times, a pain! And she knew it, and didn’t care. She had places to go and things to do, and a higher calling. As if she knew the clock was ticking, she made incredible accomplishments that continue to benefit patients to this day—including the world’s first book on VWD, which will be re-released in 2018. A legacy like that is the mark of a true leader.

Dealing the Hand Your Dealt: Pulse on the Road in Las Vegas!

I’m in Henderson, Nevada, a suburb of Las Vegas, the day after we gave another Pulse on the Road symposium about health care insurance. The air is dry and cool, the sky a perfect robin’s egg blue, and I’m surrounded by red and purple mountains. What an enchanting place to visit!

Whenever I am here, I think of my dear friend and colleague, Renee Paper. Renee was a champion of those with von Willebrand disease. She became the face of those with VWD, and advanced care for it, and for Nevada, like no one else. Nevada has an HTC thanks to her; Nevada has an NHF Chapter, thanks to her. Trailblazer, activist, she was also an emergency room nurse who had VWD and her personal story, how she was given a hysterectomy in her early 20s to stop her excessive bleeding and thus became childless, led her to become a VWD Warrior when she was later properly diagnosed as having VWD. She vowed no one else would suffer as she had.

Rewarding a partipant for a correct answer!

It seems we might have another Renee in our midst! We invited Nevada resident Kelly Lynn Gonzalez to speak at Pulse on the Road, upon recommendation of Michelle Rice, vice president of public policy and stakeholder relations at National Hemophilia Foundation. Good gamble. Kelly has VWD, as does her daughter Jacey. Kelly is the mother of 5 (yes, 5!!) and also worked in education, and now works for a specialty pharmacy. She participated here as a mother, to share the story of the birth of her activism.

In a nutshell, it was the struggle to get a diagnosis for Jacey, who suffered terrible bleeding, and who missed 47 days of school in one year, after doctor upon doctor told her it was one thing or another. Jacey had already fought off cancer, and now faced more health problems. Dealing with the multiple needs of her many children, Kelly still was able to fight the system, honor her maternal instinct which told her the doctors were wrong, and push and push not only to get a proper diagnosis, but also then health care coverage! Her insurer would not allow her to use the HTC!

Kelly Lynn Gonzalez implores
the audience to advocate and never give up

Well, that changed eventually.

Kelly is a powerful, emotive storyteller, and her presentation had many in tears. The energy level in the room, even following two hours of insurance lectures, was palpable. Kelly inspired many, I am sure, to rise up and become better advocates for their children. The audience was 60% families with VWD; an anomaly for us!

I thank everyone from Nevada who came to this symposium. Executive director Kelli Walters and her team did an amazing job handling this event. Thanks to our own Zoraida Rosado for organizing, shipping and set up. Thanks to Michelle Rice of NHF, and also thanks to Baxalta for sponsoring this!

Michelle Rice, NHF, speaks about
preserving healthcare options

Above all, thanks to every single audience member. Michelle and I agreed, from the podium, that in 7 years we have never seen a more attentive, engaged audience. (Well, Alabama was a close second!!) In appreciation, LA Kelley Communications is going to make a donation to the chapter for the wonderful audience. When you are a speaker, an attentive, receptive and engaged audience is everything.

Laurie Kelley with Renee Paper
in Puerto Rico, 2006

Renee used to tell me, “It’s not the hand you are dealt, it’s how you play that hand,” using an analogy fitting for a Las Vegas lady. In other words, you have VWD (or hemophilia). So what? The important thing is what are you going to DO about it? Renee was a no-nonsense, fix-it-now kind of lady. She never engaged in self-pity, and didn’t exactly coddle others. But she was compassionate. Not intimidated by anyone, she took the hand she was dealt (VWD and losing her ability to have children) and turned it into a national and then international crusade for better health care for those with VWD, especially women. Sadly, Renee passed away in November 2007 due to health complications. She is terribly missed. I feared for a long time there would be no one to fill her shoes; who could ever speak with that fiery passion? Who would have that dedication?

People like Kelly Gonzales give me hope.

Click here to learn more about Renee Paper, RN.


Amazing Book I Just Read


The Witch of Lime Street: Seance, Seduction and Houdini in the Spirit World  [Kindle]
David Jaher

It’s fitting to have read a book about Houdini on a plane ride to Las Vegas. We all know he was the master illusionist (much like David Copperfield, who I will see tonight at MGM, is today). But who knew the rest of the story? It’s fascinating! Following World War I, families were so grieved by the tremendous loss of life, they turned to seances and “spiritualists” to help them contact their deceased loved ones. One outspoken believer in contacting those in the afterlife was Sir Arthur Conan Doyle, the author of Sherlock Holmes! He traveled and spoke widely about spiritualism. It became such a hot topic, with so many engaged in it, that Scientific American decided to hold a national contest to see if anyone could prove that spiritualists could really communicate with the dead. On the committee was Sir Arthur’s good friend, Harry Houdini, who did NOT believe in spiritualism. As a master illusionist, he believed everything could be explained as a deception. And he successfully debunked many who claimed to have contact with the dead. But the hardest case was little sweet Mina Crandon, who lived on Lime Street in Boston, the wife of a very successful surgeon. She wasn’t a publicity seeker and didn’t want the prize money. And no one could seemingly detect how she was able to levitate a table, conjure spirits that spoke, command items that flew around the room. Without giving away this fascinating and sometimes lurid tale, this case destroyed the friendship between Sir Arthur and Houdini, made Houdini more famous, and yet reviled by the spiritual community, embarrassed the esteemed Scientific American publication, and brought to light even more bizarre facts than anyone expected! It is a riveting page-turner, extremely well written and informative, full of wild characters and celebrities, and the ending is a shocker. Read it! Five/five stars!

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